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Wednesday, April 30, 2014

Although we rarely make reservations anywhere, we still tend to know exactly where we’re going. Our life on the road has evolved to a kind of “Carney” existence. We know the rallies where we’ve committed to speak, and therefore we have a schedule of places we need to be at certain times. But the time in between does give us some flexibility. Once we passed Chatanooga, I looked at the map and realized we were only about 3 hours from the next rally location in Lebanon, TN. We planned to arrive on Wednesday, and that was only Tuesday. So when I saw an intriguing park off to the East of the highway, I suggested we take a look and maybe stay the night. I had no idea what the park was, I just saw a motorhome parked on a lakeshore with only one or two other RVs in site.

Jim said OK!

Here’s our site. Pretty nice huh?

And, since it was so early in the day, we had time and energy to go for a bike ride. You can see the highway on the other side of the lake … that’s where we were when I spotted the park.

I like taking pictures of the view when we open our door! It’s always different.

Saturday, April 26, 2014

I have been a fan of Ashleigh Brilliant since college days and the title above has been my guiding light! It took me a while (51 years), but I found my Fantasy in the RV Lifestyle.
For the last 3 weeks, I’ve had way too much of the truth. The truth of growing older, the truth of how Alzheimers steals our loved ones from us, the truth of taking care of our parents, and finally the truth of getting sick with bronchitis and still needing to get work done. I say we ‘escaped’ because the only way to leave Mom is to not say goodbye. She really doesn’t remember if she saw me this morning, or not for months, but if I tell her I’m leaving – she’ll get very upset. So, I have to just give her a hug, tell her I love her and walk away saying “I’ll see you tomorrow.” I’m confident it’s best for her, but it just kills me.
Now we’re back on the road and living our fantasy. We woke up this morning to peace and quiet and the delightful singing of birds, punctuated with an occasional ringing of the Carrillon bells from the nearby tower here at Stephen Foster State Park.
I’m feeling better already, sinuses are clearing up and the cough is minimal. Jim is just the best partner in this fantasy of ours, I’ve simply checked out for the last three weeks, while he cooked, drove, answered emails, and kept up with all the daily details of our life. I have a lot of catch-up work to do. My ‘weekly’ Picasa tip hasn’t been written in 3 weeks! and it’s now time for our monthly newsletter too! Quarterly tax return bookkeeping must be done too. But, somewhere during today, we are going to make time to enjoy this delightful place and visit the Stephen Foster museum, maybe take a walk or a bike ride. No chance of going kayaking on the Suwanee river though, it is flooded beyond all recognition and boat ramps are closed.
We’re on our way to Lebanon, TN and the FMCA International Area Rally. We’ll be presenting our “Technology for Travelers” and “Picasa and Picasa Web Albums” seminars there. Hope to see some of you there.

Wednesday, April 16, 2014

Would you believe I haven’t even had my computer on for 3-4 days? Here’s what’s been going on… A couple weeks ago I got a call from the Assisted Living Facility where Mom is living. She had taken to wandering into other people’s rooms. This was not good. The rooms were in the Independent Living side of the facility and those folks were none too happy to have some stranger looking in on their bedroom! Something had to be done.For the first 3 years it was great that the place was so big because she likes to walk, and walk, and walk. And, she was free to walk outside as well – the property was beautiful and there was a sidewalk all the way around the building. When the weather was not good for walking outside, she had lots of hallways to wander inside. Her apartment was on the 4th floor at the end of a long hallway. She loved the view from her balcony overlooking a quiet tree-filled section of the property, facing the sunset. And she liked the tranquility at the end of the hall.
But, for about the past 6 months she keeps saying she doesn’t know where her room is, and she continues to walk aimlessly. We’ve been worried that, at some point, she might wander off the property and, with a busy street close by – that could be dangerous.
I didn’t want to admit it, but her Alzheimer’s had progressed to the point where she could no longer function where she was. God! I HATE this disease! My beautiful mother, who was a CPA for most of her working life, then ran a computer training center with me for 14 years (she was the Excel expert,) then retired and traveled the world scuba diving and hiking, could now be found curled up on a hallway bench, asleep, in an assisted living facility.
Luckily I got the call when we were still in Florida and planning one last visit to our Fort Lauderdale home base. As soon as we got here, I hit the ground running and met with staff at her current facility. They made it clear that something had to be done, they couldn’t have her walking into other peoples’ rooms! They suggested a private aide to be with Mom every day … I acted on that option for a couple of days, researching aides and calling friends who I thought may be able to help. But, what were they to do? Follow her around all day and just see that she didn’t open any doors that weren’t hers? It became clear to me that this facility was just too big for her anymore. And, the smaller facility (on the same property) was too confining. If I moved her there, she would still be allowed to go outside, and she would probably wander back to the original facility – so I would still need to hire an aide for at least every afternoon. I wanted to find a facility that was “just right.”
I have a lot of friends who also take care of parents with dementia and I surveyed everyone. Dee M told me about a place in Pompano (quite close) that is one floor and the rooms are built around a courtyard. Sounds great! I visited and met with staff and discussed all the details, I hung out and watched the other residents at lunch and other activities, I looked at the rooms, and I was impressed with everything I saw and heard. I also visited other facilities but I kept coming back to “Grand Court.” They said that I could use their ‘respite’ program to come stay there for a couple days before making the commitment to move her. Great! So I went and gathered Mom, told her to grab her pillow and a change of clothes, we were going for a “Sleep Away” for the weekend!
I really want to know everything, so I stayed for 2 nights, sleeping in the bed with her. I didn’t get much sleep, but I’m confident I understand how the place works. I know what lights come on at night, how noisy it is, how the air conditioning works, how they administer her medications, and how they serve breakfast, lunch and dinner. I picked a room that was just around the corner from the main lobby, and had a glass sliding door out to the courtyard. I was thrilled the first time Mom left the room by herself and came back without help just a few minutes later. Actually, she did that several times. It seemed like she was testing herself! She was excited that she had a room and knew where it was!
I never told her that she was moving, but we just started making this room be home. After my 2-day test period, I left for the day and my friend Dee T. visited her. They walked around the courtyard, then had lunch, and visited the craft room. Dee sent me a text, “Marilyn says, ‘I’m so glad I decided to move to this place.’” Tears of Joy! That was it, the decision was made. Here’s a picture of Mom walking in her new courtyard:
I needed, and used, the help and support of Jim and several other friends this week. I’ve been leaning hard on my friends. Sorry guys, if I talked your ears off about every minute detail of my Mom’s life. Thanks so much for listening, and helping with the move. For others of you out there dealing with this insidious disease, please read the book, Creating Moments of Joy. It’s probably the 7th or 8th Alzheimer’s book I’ve read, but it’s the first one to get inside their confused brains, deliver some real understanding, and offer concrete ideas for improving their quality of life. I’m now reading “While I still Can” written by a current Alzheimer’s patient with early onset of the disease. The author, Rick Phelps, also set up a Facebook Group that is very helpful. It is called Memory People.
Jim helped me pick out a nice all-in-one touchscreen computer to put in Mom’s room. No, she won’t be able to use it – she can’t even use a TV anymore – but, it’s a great way to let other people play her travel videos for her, play music CDs or use Pandora (the Frank Sinatra channel is great) and I plan to use Google+ Hangouts or maybe Skype to video call with Mom over the summer. It’s running Windows 8.1 and Jim set it up so it comes right on to the tiled Start screen and he set up just 4 tiles: Videos, Pictures, Music, and Call Chris.

I copied several of her videos onto the computer’s hard drive. So, all an aide needs to is turn it on, tap Videos and choose one: Borneo, China, Red Sea, Turkey, Australia, Jordan and Petra, Vanuatu, etc. All these are Mom’s videos of her travels, you can see some of them on her website, Marilyns Planet. Lots of underwater video, but lots of regular land travel video also. She watches them without recognizing anything, but she sees herself, and hears her voice, and that keeps her pretty interested. I love it. I wonder what she would have thought, back when she was shooting the video, if she knew those films would be the only remnant of her memory.

Update 1 Week Later: I knew it was too good to be true. You expect an Alzheimer's patient to have a tough time with any move. It was amazing that Mom adjusted so quickly ... she even told me that "The first time I saw this (referring to the courtyard) I knew I wanted to live here." When I had to leave, she just sat on her bed, waved her hand, and said G'Bye.
Well, a few days later when we visited, she had emptied everything out of the drawers and put them in a duffel bag - she wanted "Outa Here" This is very common, but it's no fun. We asked her why the duffel bag was packed, but she just giggled and said "I don't know." So we put everything back and took the duffel away.
The next day, I took advantage of an absolutely gorgeous day here in Fort Lauderdale and took Mom to the beach after her Doctor appt. "We went to the doctor?" It was a great afternoon, so it really distressed me that she freaked out when I took her home and then had to leave. "What do you mean you're leaving? I thought we were going to be together? Where are you going? Can't I come with you? What am I supposed to do without you?" God I HATE Alzheimers.

Inspiration

"There’s a myth that time is money. In fact, time is more precious than money. It’s a nonrenewable resource. Once you’ve spent it, and if you’ve spent it badly, it’s gone forever."— Neil Fiore: Author, speaker, and trainer on managing business